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The value of talking

September is World Alzheimer’s Month; with World Alzheimer’s Day on 21 September being its focus. This gives organisations and individuals around the world the opportunity to raise awareness, highlighting issues faced by people affected by dementia and demonstrate how people can live well with the condition.

Alzheimer’s disease is the most common type of dementia in the UK, affecting 62% of those diagnosed. Although most widely thought of as a condition relating to older age, there are over 40,000 people under 65 with dementia in the UK.

Dementia is a devastating condition for those with the disease and for those who care for them, as Izzy found, when both her mum and husband were diagnosed with the condition in quick succession. Sadly, Izzy’s mum died in 2011 and Bill in 2016. Izzy says: ‘Dementia can be a lonely disease and there is still so much stigma surrounding the condition. I was looking for answers to questions I had on dementia when I first came across Talking Point in 2003. I started reading other people’s posts, which was helpful; it was great to know I wasn’t alone.’

Talking Point is an online community set up by Alzheimer’s Society where you can ask questions, share experiences and get information and practical tips on living with dementia from people who are going through, or have had, similar experiences.

Izzy continued: ‘I had drifted away from the forum for a bit, as although I knew what was ahead for my mum and Bill, it was hard to see the issues laid so bare. Dementia is such an awful condition and I found myself having to return to the forum when everyday life became more challenging. Talking Point became my main source of support.

‘In the 15 years I’ve been involved with the forum, I’ve had some amazing support…I was approached by Alzheimer’s Society to see whether I would like to become a volunteer host, and a year later, I was asked whether I would consider becoming a moderator. I said “yes” on the spot, to both. Being involved in supporting people affected by the condition that’s had such an impact on my life, is incredibly rewarding. It’s given me a real focus, especially since Bill passed away.

“Every person with dementia shares a common experience that all the folk reading the forum understand. Someone can just say they are in a bad place and know someone will listen and understand. I often see people becoming members, seeking and receiving support over a range of issues; everything from feeling very overwhelmed after getting a personal diagnosis or a loved one being diagnosed, to questions around legal and financial matters.

‘Talking Point is a really special place…as time goes on you can see the same people giving support to others as well as receiving support themselves. It’s almost impossible to say that any particular post has had the most impact on me but seeing this interchange really brings home how important the forum is to me.

‘I think I speak for all members of Talking Point when I say that my hope is that there won’t be a need for us in the future…Research will beat dementia but we need more funding and participants. I’m taking part in a study at my local hospital through Join Dementia Research, and I recommend everyone to sign up and help in their own way.

‘In the meantime, I know Talking Point will continue to go from strength to strength. There will be one million people living with dementia by 2021, and we still don’t know how to cure, prevent or even fully slow down the condition. There is a real need for Talking Point…its staff and volunteers really care and are passionate about what they do. I know I’m biased, but we have created a safe, sympathetic and caring environment for people with dementia and their carers in Talking Point.”

If you’d like to talk to someone for information, support or advice, please call the National Dementia Helpline on 0300 222 1 122.